I got the same response again...

[momof3boys]

For the second day in a row, I was told to take another keppra xr tablet! Seriously? what more are these people wanting from me?

For the past 10 days I have been having auras and seizures. yesterday I was told to take an extra tablet, but then this morning at 5am I had a seizure. Today, I get a call telling me that she got my message about the seizure, and they would get back to me later today about what to do about that seizure that took place after the fact I took the extra keppra tablet yesterday!

She calls, and tells me the dr wants me to do the same thing! Take another keppra xr tablet again! :soap:onder:SERIOUSLY?????


How is this going to work? By taking an extra keppra xr tablet each day? for two days? They think this is going to do the trick and take all this shit away?

I cant take it no more. I dont know what the hell to do. My mom came over today because it was a snow day here and the kids were out of school. After this morning's seizure and having a terriable headache, she came by to help me out. She said for sure we are going to look into a neurologist not in Nebraska... but in Kansas City MO. Thats where my pediatric neuro was at, which he is now retired. But were wanting to see if he would recommend a good neuro in his area for us.

Were obviously getting no where with this guy. The only reason we are going to him is because the neuros in our town now, doesnt have the testing available here. Its in Omaha Ne that is where they have the drs who can perform the tests.. example.. EEG, MRI, etc.

It seriously sucks that we cant find a good neuro in our area. All Im wanting is for these auras and seizures to go away. Thats all. What more can a person ask for?

 

[Autumn Breeze]

(((((hugs)))))) Sounds like it's time for a new doctor. Suck.

 

[momof3boys]

You know, thats exacly what my thought was when I hung up the phone. It sounds to me like this dr is using every exscuse in the book to get me to say enough is enough and go on. I know it sounds crazy, but I know I need to get out of that drs office... the thing Im most afraid of is who will I go to? All their hospitals there in that town, University Of Nebraska Medical Center, which is where my Neuro is now, and the other... Creighton, which is where my neuro who I am seeing now, his partner.. the neuro I saw back in 2007-2010... he's the one that is working at the Creighton Hospital. They both are on the same page as far as how they see things between the two of them. When I was with the neuro that is now at Creighton, he wouldnt even consider any testing... such a VEEG or MEG test. NOTHING. The only thing he did was riase my Keppra from 3000mgs to 4000mgs which caused the increase in seizures and when I returned to his office, he was gone. I wish there were more neuros available. But here in this town where Im at, there is only the basic neuros here. The kind of neuros where you walk into their office, they do the usual tests like making you walk a straight line, having you follow their finger with your eyes... etc. Then they are known to write you out a prescription and send you on your way.

I went from seeing a local neuro here in town.. back in 98-2007 to the neuro who is now at creighton, til 2010 when I was put with the neuro who i am now seeing. since seeing this neuro, Ive got to have a VEEG which clearly states there are visible epileptic spikes on it, but the thing this neuro is holding onto is that the seizures he witnessed on the video, didnt register on the EEG. which he thinks are non epileptic seizures. So he had me see a psych dr, it was her that said they were epileptic seizures, not non epileptic seizures. So I continued with the keppra xr since may 2011, and everything was going fine til last week. Out of the blue they just popped up. Its been hell since. I have no clue what the f this dr is thinking... but seriously, why wont he agnolige these seizures and only respond by telling me to take a extra keppra tablet for two days?

 

[rich956]

(hugz)

 

[Autumn Breeze]

I feel you. There are two in my town. One won't see me, the other said it's PNES and was rude about it. I had a good neuro exam (walking a line, touch your nose) YET, she wrote a script for tegretol.

I could drive into Atlanta, but then I'm automatically paying twice as much (self-pay/uninsured)

Do you have a rescue med like Ativan?

 

[Cint]

Oh Krisitn..... {{{HUGS}}}.... I wish you could come out here to Denver. There are several epileptologists at the Univ. of CO @ Denver. Plus it is a teaching place, so they are good.

 

[momof3boys]

I have two ativan on hand. I havnt used them for a few days, since my last complex partial seizure. Ive had the auras and all the crap, but have been fighting this off the best I can. My dr wont prescribe me any ativan. He claims that its too addictive... but what the heck am I suppose to do when Im experiencing seizures? Im sick of all the crap. I just want all this to go away.

Cint-- i wish we lived closer to a different set of drs too! Im sick of having to deal with all the crap!

 

[Cint]

Can your GP prescribe Ativan or do anything for your seizures?

 

[Autumn Breeze]

Wow Even as addictive as it is, I was given a 6 month script. I *might* have taken 1 months worth. The rest are all stored in my medicine locker.

 

[momof3boys]

It was my GP that prescribed me the ativan in December when I went from trying the generic keppra xr to having to go back to the name brand keppra xr. Even with the seiuzres came about then, this neuro wasnt going to prescribe me any ativan because he felt the seizures were not from the change in medication... trying the generic keppra xr for two weeks, when Ive always taken name brand seizure medications. His words were..."Im not going to prescribe you ativan because it is a very addicting medication, and whoever gave you this ativan you had on hand, that "treats your anxiety" .... which I was NEVER dx;d with anxiety! you can go back to them and have them refill your prescription! LOL

The last time I was given ativan was by a dr at my primary care drs office, who I had to have a follow up visit with, after being taken to the ER and dx;d with Bronchitis, and given hydrocodone, which caused me to have seizures. In return, the primary care drs office gave me a prescription for the seizures to stop while I quit taking the hydrocodone and also said it would help with the chest pain I was having with the bronchitis. I took maybe one or two.. the rest was kept in the medician cabinet and had actually expired by the time december 2012 came about and I had the seizures come on with trying the generic Keppra Xr. Talk about a huge mess with this neuro of mine!

Ive been taking ibuprofen for the headache pain. But nothing more since. Im just so damn tired of them telling me to add an extra pill! Like thats going to take this crap away!

 

[Autumn Breeze]

good grief woman

 

[momof3boys]

Yeah its been a all round mess since my VEEG in march 2011.

Pretty much this sums it up:

march 2011 I had my first VEEG. I had spikes and waives show up on EEG, but there were times where he would see me having a seizure on the video, that wasnt coming up on the EEG, he said those were considered NON epileptic seizures. Only because they didnt show up. Referred me to a psych dr. Saw her, and she confirmed the seizures had stopped since being put back on the Keppra. Saw her for months. No seizures occured after being put back on the Keppra. My last appointment with her, she concluded that the seizures he saw that were not showing up on the EEG, were seizures that are epileptic and are probably too deep to be picked up. I saw her from March '11- July '11.

May 2011... two months after my VEEG, I was told after trying Lamictal and Vimpat in the months of March and April, that didnt work, he wanted me to stay on Keppra XR at 3000mgs. Since then, thats what ive been on. working good!

My last appointment was with the neuro in august 2012. He concluded that things were going good and I would see him again in august 2013.

I tried the generic keppra xr on Nov 15 2012, and went for two weeks feeling weird symptoms. then started having seizures. i was put back on Keppra XR name brand, but was told the seiuzre that occured were not from the generic. That was the time I had to take the expired ativan i had on hand here from having bronchitis in november 2011. Once I was switched back to the name brand keppra xr, the seizures all went away.

Well now comes January 21, 2013. I went to bed, woke up in the middle of night having an aura. It was mid night and I felt this strange feeling. ive had the auras before and recognized the signs. At 2am I had a seizure. I phoned the drs office, and was told it was from a virus. OK. Then as the week went on, the auras were coming more often, and it went from having simple partial seizures to complex partial seizures. Since yesterday, ive been dealing with the crap of just taking one more extra keppra tablet each day is going to do the trick! which is total BS in my eyes.

 

[CQ:)]

Kristin,
Sending you some cyber hugs.

It really pisses me of when I read how you & other members have trouble with your neurologists who won't listen or help. Why on earth are these people even neurologists if they don't want to listen to the patient? :soap:

It would be good if you are able to find another neurologist who will listen to you & actually listen to you. If you were to find another neurologist would the neurologist have to be in your town or near your town for it to be covered by your health insurance? For example - if you found a decent neurologist but they were an hours drive from your home would that be covered by your insurance?

 

[CQ:)]

I feel you. There are two in my town. One won't see me, the other said it's PNES and was rude about it.

I live in a town which only has 2 neurologists in it & they both work at the same clinic. I have seen the same neurologist since my seizures returned in 2002.

I also have another neurologist in the city who works at the hospital where I had my surgery. I see the neurologist in the city for regular checkups at the hospitals epilepsy clinic.

Both the neurologists I see are great because they are both caring, listen to what me or my Mum say & have a great sense of humor. Reading posts on here from people saying how they have no luck with their neurologists reminds me that I am lucky not to have 1 good neuro but 2 excellent neuros .
At the moment I have more contact with the neuro in the city but he keeps my local neuro up to date with my progress.

 

[AngelwithDentedHalo]

With the insurance I have, I have to have a referral for everything, especially Specialists and even had to get a new referral to see the Neurologist I've been seeing for 2 years for my foot thing. I was actually referred to a woman Neurologist and ended up seeing Dr Riess and I couldn't be happier, he's great & I hope you find a better Neurologist, check outside your area if you have to.

Maybe you don't need more of Keppra but a different med altogether.

 

[momof3boys]

Kristin,
Sending you some cyber hugs.

It really pisses me of when I read how you & other members have trouble with your neurologists who won't listen or help. Why on earth are these people even neurologists if they don't want to listen to the patient? :soap:

It would be good if you are able to find another neurologist who will listen to you & actually listen to you. If you were to find another neurologist would the neurologist have to be in your town or near your town for it to be covered by your health insurance? For example - if you found a decent neurologist but they were an hours drive from your home would that be covered by your insurance?

I pretty much just to have to check with my insurance on the dr and see if they are covered. We found out my old pedatric neuro is covered, and he was in Kansas City, MO. We were hoping he was still working, but he retired long ago, they just havnt updated his information.

But yeah, as long as we get it checked out by the insurance, the neuro can be in our state, or a different state. They have to be "in-network" in order to be covered. Any neuro considered "out-network" is not covered.

Were going to look into neurologists in Kansas City MO. Its about a three hour drive from here, but for us, its worth it to find a good neuro thats going to listen to you, and not just leave you to the side. When we moved here in 98, we were traveling to Kansas City, MO to see my pediatric neuro at the time, and it wasnt that bad. It just would be nice to have a closer dr nearby.